This weekend, I'm on an impromptu trip to the Oregon Coast with two of my best friends. They texted me on Thursday night asking if I wanted to join them for a weekend in a cute cottage rental, complete with a private jacuzzi. Robbie’s out of town right now, anyway—also the weather is still shit in Portland (rain during Pride month feels downright homophobic, don’t @ me)—so I thought, Why not?
Spontaneity isn’t really my style. Not because I don’t want it to be. In fact, I’ve always wanted to be one of those cool people* who books last-minute trips to wherever because flights are cheap and I work remotely anyway. But having a disabled body often means you’ve got to both plan in advance and also backup plan in case things go awry.
This time, though, I had the luxury of making a quick decision. I’m feeling generally ok after recovering from covid a couple weeks ago. While I’ve got some body pain it’s not enough to be a dealbreaker. So last night I found myself doing something I never would’ve dreamed I’d be able to a year ago: I soaked in a hot tub** with my friends in the pouring rain and learned how to smoke a joint (I typically eat my weed).
Right now, I’m sitting in the aforementioned cute cottage rental cuddling with Parker, my dog (cat stayed home, obvi), and typing away on this metal rectangle while we all get some rest and recover from our big beach walk this morning.
I just got back from a solo trek to the beach—and it was literally a trek, complete with a steep hill and two sets of all of the stairs in the world—where I sat, bundled up because Oregon, and read a few essays from Greedy: Notes from a Bisexual Who Asks for Too Much by Jen Winston. While lying as flat as possible on a towel in order to prevent the wind from hitting too much of my body (the known way to stay warm on the beach in Oregon), I remembered the last time I read solo like that on the beach.
It was several years ago, though it honestly doesn’t feel like it could possibly have been that long (thanks pandemic and medical trauma). But I know it must have been around 2018 because it was before I developed gastroparesis.
I don’t even remember what beach I was at, but I’d wandered down from our vacation rental on my own and read a chapter or two from Women Who Run With Wolves.*** I remember it was cold even though it was summer, so I was bundled up in several layers. I also remember it was windy, so I was hunched over to prevent the wind from turning the pages. (I did not opt for the lying flat route that time, I think because I didn’t have a blanket or towel to lie on.)
I spent a lot of time near the water that summer—in the ocean (which is fucking cold in Oregon so you know the commitment was there) and the Sandy River—even though I’m terrified of water and don’t consider myself a strong swimmer. I guess I felt like something was calling me to it. I had this vision of sorts—the daydream kind not the psychic kind—that I had something like a hardened shell encasing me. A shell that maybe at one point was protective armor but had long since become unuseful, a hindrance. And the water I spent so much time in that summer was going to gradually erode it.
I repeatedly dreamt about that shell/armor slowly disintegrating. I even wrote a mediocre poem about it. I thought that if I could rid myself of it, I would emerge, shiny and fresh, more fully in my skin, a new person. (I’m realizing now the whole thing was weirdly biblical, baptism-adjacent, but no judgment, past me.)
The armor—while not a tangible, visible thing—was psychologically real. Like most of the psychological armor we shield ourselves with over time, it was there for good reason. When I was a kid, I was sexually and physically abused by my brother. I also later, like many survivors of abuse, developed disordered eating in my teens. Looking back, it all feels very cliché (though I’m pretty sure I just wrote that in order to minimize it for my own sake to avoid even a hint of reliving the trauma), but clichés are clichés for a reason.
Anyway, between all of that and also having chronic illnesses that got worse the older I did, I developed a piss poor sense of my own body. By that, I don’t necessarily mean dysmorphia, like in the sense that what I saw in the mirror wasn’t actually what was there. Though that was part of it. It was more like a total lack of understanding of my body in the world, how much space I took up, and what it even meant to have a body. I couldn’t perceive my body as a thing.
It was almost like a lack of hand-eye coordination—which I also have, and every time someone tosses me something to catch, like keys (!!), it feels like a personal attack and my instinct is to freeze instead of put my hands up. It was like that but with my whole body.
Something that was a part of all of this, too, was sex. As I realized how much I wasn’t in my body—how much I despised my body, even—I also realized how little I’d been present in my sexual experiences. I realized I’d mostly been following social scripts and acting out what I thought I was supposed to be like in bed, as opposed to actually being in the moment and exploring my own sexuality. This was all a part of the armor.
During that summer in 2018, I was trying to explore, come to terms with, and live inside my body. My therapist encouraged me and gave me some ideas and exercises. She suggested I touch my skin more, so I spent time each day purposefully lotioning up. She suggested I look at my body more, so I spent time sitting naked in front of my mirror and just noticing things. I really looked. I examined. I made notes. I also spent a lot of time in the water.
All in all, it was starting to work. Months went by, and while at no point did I wake up and feel fixed, I felt more attuned to myself. I knew what I looked like. I knew my shape. I understood a bit more about my body’s experience with the world. I felt more real, more sexual, more at-ease. I felt like I was healing.
Then came gastroparesis.
Developing gastroparesis turned my world upside down and put plaster into every crack I’d made in that armor. I lost weight rapidly. My relationship with food almost immediately went to shit. The body I’d worked so hard to see was suddenly unrecognizable, and I didn’t even want to recognize it. It was really really awful.
Any progress I’d made regressed entirely, and then some. I disassociated as much as possible out of protection and also to try and escape the 24/7 pain that accompanied my feeding tube. Being in my body was neither a good nor safe place to be. I didn’t want to be in it. I didn’t want to feel like a sexual person. At times, I didn’t want to exist.
And that’s all I’ll say about that.
I’m now seven months feeding tube-free. I still have gastroparesis, of course, but the symptoms are manageable right now. Some days the nausea and bloating is worse than others, but I can usually get by with medication and pacing my eating.
I’m also in a better place mentally. My depression still ebbs and flows. But there’s certainly more ebbing now than there was a year ago. I’m feeling closer to friends and am trying to ask for help more (a problem to discuss another time). I’m finding ways to cope—like reading a ridiculous amount of smutty romance novels, taking walks with my dog, and also doing ceramics. I’m doing mostly ok. I have so much work to do, so much ground to regain. But I’m doing ok.
Today I found myself reading on the beach again, and it felt so familiar I could cry. It felt so much like that last time in 2018 that I thought I might close my eyes and wake up to the memory. It’s weird how we sometimes come full circle. Time and life are supposedly linear, but I’m not convinced. Healing certainly isn’t, anyway. It’s been four years and yet here I am, feeling my armor from the inside and trying, once again, to break out of it. 🤷🏻
*In my head, these cool people can also drink more than one small cocktail and not end up dealing with the horrible effects of alcohol intolerance, get less than nine hours of sleep and still function, and go on a mildly difficult hike without crashing for days after. So I guess these cool people are non-disabled. Goddammit.
**A year ago I had a jejunal feeding tube. Hot tubs and feeding tubes are not friends. Actually, any sort of open body wound and hot tubs are not friends. Go in a hot tub with something like an abdominal feeding tube and you’re pretty much guaranteed to walk away with a serious antibiotic-resistant infection.
***Gender is confusing and my experience being nonbinary is no exception. While I feel like I identify mostly as agender, I also find some content meant for women to be relatable and helpful for navigating the world. I don’t know. It’s complicated.